IBC questions

[Krysti]

Dear Sarah,

The "Dr. Slaymon" for IBC treatment is Dr. Christofanelli at M.D. Anderson. He just opened up the new IBC Center there. Glad your friend has you there for her to help in her fight with the beast!

I left NED land last week and I tried to get on a Tykerb study this week, but no luck - one just closed and one hadn't opened yet that I would fit into - all others needed more chemo after recurrance...on to KOS-1022 and Herceptin.

Krysti - Indy
dx IBC bi-lateral 3/05, ER/PR-, Her2+
4 T/4 AC dose dense
bi-lateral MRM 7/05, nodes negative
48 rads/2x per day
Herceptin 12/05 late because of bad tests
10/06 spots on lungs get bigger
Clinical trial starts 11/7, Herceptin and KOS-1022
May we find the cure!

[sarah]

Thank you Sandy and Krysti for the information.
I'll pass the info about supplements on to my friend and also the name of the expert.
Krysti, I hope you get in a trial soon, it sounds like a very promising drug that all of us with HER2 would also like to be on.
My friend goes for the interview Nov. 9th and we'll see how it all goes. I think it's wonderful she found a trial and one only 2 housrs away from where we both live.
Good luck with you health
Thanks
sarah

[madubois63]

If God forbid, the IBC came back - Tykerb is next on my list. My girlfriend is having great results so far (not IBC - bc spread to the brain)...As to supplements - check with your onc. My onc center offers a nutritionist...

[sarah]

Hi Mary Ann!
We're all thinking of you. You're such an inspiration to all of us. so courageous and with such a positive attitude.
Here in France, apparently, brain mets or IBC make you eligible for Tyberb trials. Let's hope it also opens up very soon the way Herceptin has.
Good luck with your transplant, keep your strength up. You're so sweet you must be everyone's favorite patient!
luck and love
sarah